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Renewing Our Commitment to the Global Call to Action on Familial Hypercholesterolemia

24 Sep 2022

Familial Hypercholesterolemia or FH is a genetic disorder that causes high levels of cholesterol from birth. The condition affects 1 in 311 people or approximately 25 million of individuals worldwide. Untreated, lifelong exposure to elevated concentrations of low-density lipoprotein (LDL) cholesterol leads to premature heart disease and deaths. 

In 1998, the World Health Organization (WHO) formally recognized FH as a global public health issue and published a set of recommendations to address its burden. Two decades later, implementation of the WHO recommendations has remained largely insufficient in many countries and regions. In fact, nearly 90% of individuals living with FH remain undiagnosed and therefore untreated, despite the fact that established evidence shows that early diagnosis and treatment of FH are critical to averting further premature cardiovascular disease morbidity and mortality. 

In 2020, representatives from the global FH community launched a Global Call to Action and issued a set of revised recommendations to reduce the clinical and public health burden of familial hypercholesterolemia globally. On FH Awareness Day, the World Heart Federation (WHF) urges governments, the World Health Organization, and the global health community to: 

  • Raise awareness of FH as a global public health issue
  • Actively screen, test, and diagnose for individuals with FH by implementing systematic cascade screening or universal screening for children 
  • Manage and treat FH patients to prevent further premature heart disease and deaths 
  • Guarantee care for severe and homozygous FH patients since they require specialized guidelines and care 
  • Develop family-based care plans for people living with FH and ensure opportunities for patient involvement as well as shared decision-making 
  • Establish and fund FH registries to collect relevant data, identify gaps, inform best practices, and monitor progress 
  • Conduct research and implement FH programmes to improve care 
  • Understand the value and costs of FH interventions  
  • Advocate for the implementation of the above recommendations! 

In light of the continued need to raise awareness of FH and identify gaps as well as opportunities, the World Heart Federation has conducted, in partnership with FH Europe, an international survey to map the state of FH around the world. The preliminary analysis of the data concurred with well-established evidence: FH remains a widely underdiagnosed and undertreated condition across all countries and regions. Fortunately, the initial findings also suggest that many countries have initiated more actions to address FH at the national level. 

Lastly, on 14 October 2022, WHF will launch its updated WHF Roadmap on Cholesterol, which will include the latest evidence on the diagnosis and management of FH, as well as lessons learnt since 2017. WHF roadmaps are frameworks that help identify roadblocks as well as potential solutions to the effective prevention, detection, and treatment of cardiovascular disease. 

Please visit our FH webpage for more information and resources.